It was a good day today, if a bit of an indication of what is to come in our next three weeks. The worst effects of Daniel's "whammy" chemo on Wednesday finally wore off, and he felt less nauseated this morning. This left the effects of the steroids undampened. At first, we were thrilled that he was eating a few bites of eggs at breakfast...but our excitement turned to a bit of concern as he kept eating...and kept eating...and kept eating. Soon we were afraid he would throw up, since his stomach has shrunk so much in the last two weeks of only occasional nibbles of food. We finally took away his food, which led to a meltdown. And this has been the story of our day. The volatile mood swings are starting.
We went over to the Seven Lakes neighborhood and took a long walk along the bike path into Boyd Lake State Park, marveling the whole time how how normal we felt, it sort of just felt like we were on vacation. It only took a day off work, a four mile drive and a little walk along the shoreline to put us into relaxed vacation mode. We extended our vacation with outdoor burgers. But then it was back home to clean the house, and vacation was over. We have one more day before the next well is up and Bobby has to go back to work, so maybe another two-hour vacation/walk can happen tomorrow. The sanity was helped greatly by today's. It ended with another meltdown over not being able to stop eating dinner, even though the tummy was painfully hard, bloated and gassy from his day of suddenly being obsessed with food. He cried himself to sleep, curled into my body so tightly it seemed he was trying to somehow melt himself back into my womb, while simultaneously clawing at my face and trying to push it away.
The bright spot of the evening was, ironically, giving him his meds. He bravely swallowed his foul-tasting dexamethasone, then cheered and clapped for himself.
After he had finally cried himself to sleep, I took Alex from Bobby, who was holding him on his chest and dozing, and nursed him into a state of calm, then climbed my sweaty, sticky self out of bed to brush my teeth and take a shower. As I was showering, I realized I couldn't actually remember the last time I had done so. I consulted the stubble on my legs and decided that judging by that, it must have been about three days ago. Then I turned off the water, only to hear Alex start to wail, so here I sit in my underwear in the living room, rocking and nursing him. The child is a bottomless pit. He is filling out, turning into a chunky little monkey, with wide, surprised blue eyes taking in as much of the world as they can before they cross. Already, the differences in personality between him and his big brother are becoming obvious. Alex has less of his dad's pragmatic stoicism and more of his mom's intolerance of BS. He calls it daily on being ignored, or not being constantly fed, or just general discontent over tummy bubbles and other discomforts. Which is necessary. If he didn't do so, I might actually forget he is here in the insanity that big brother is creating in our house these days.
Oh, and this: brushing Daniel's curls after his bath tonight, I am suspicious his hair has started to go. No missing clumps yet, but just an all-over thinness and lifelessness that wasn't there before. I'm in mourning over it, and my sentimental obsession is reaching new heights as I bury my face in it to smell it and feel it tickling my face, memorizing the color and the way it swirls and curls, but in a way, I almost look forward to it being gone from the standpoint that when we are out and about, pushing a stroller full of an overweight, hysterical child who looks like he should be able to walk on his own, maybe his bald head will clue people into the fact that he is not the ill-trained brat he appears to be, but sick.
I have received so many compliments lately on how brave and strong we seem to be in the face of this nightmare. I don't entirely know how to respond to this, so I say thanks. Or I say maybe we just haven't realized yet what is coming. But honestly, I think it's that this is our road taken, and as such, it is easier to be the ones experiencing it than the ones standing helplessly by watching it. If i had to watch someone I love going through this, I would probably feel a whole range of emotions I am spared from by being in the middle of it- guilt over not being able to help, imagination going wild over how hard it must be, guilt over forgetting about it sometimes and just going on with my life, knowing that they had no option to forget or be normal. All things that I don't need to feel. And lest anyone think we are actually keeping it entirely together, here are a few honest confessions that might change your mind and convince you that we are normal after all:
Several times today, i have gone back to where I left the newborn...only to not find him there. Then I have to think back to where I actually left him the last time I had to lay him down to deal with one of Daniel's problems.
I went to the park on Thursday to an outdoor play group, and at one point left both babies with the other moms to go to the car to get a hat for Daniel, and moved the car to a closer parking spot at the same time. As I was driving, I had the thought that if I was gonna make a break for it and just keep driving, now would be an excellent time. Both kids were in the capable hands of five responsible women.
I carried my cell phone to the car to look for my cell phone.
Both Bobby and I slept in our clothes last night because we didn't have the energy to shower or locate pajamas. And we didn't brush our teeth either, because our toothbrushes were still in the overnight bag in the car.
Bobby went to the store tonight to buy three items: a new toilet seat (because the old one bucks us off sideways when we sit down less than perfectly aligned because a bolt broke), refrigerator magnets (to handle all of our new paperwork and information that needs to hang on the fridge), and Glad Press'n'Seal (to cover Daniel's port with on infusion days after we spread numbing cream on it). He came home with three items: Glad Press'n'Seal, new toothbrushes, and antibacterial wipes.
We felt a little angry about all the healthy kids running around the park today. Then we felt angry that we felt angry, because we don't wish ill on them, and we could have it so much worse.
After all of Daniel's fluids that accompanied his chemo yesterday, his diaper failed overnight. I awoke lying between my little boys, my back soaked in toxic chemo pee, my front soaked in breastmilk. So I pulled off my shirt and threw it on the floor, got up and grabbed a towel, laid it over the puddles, changed Daniel's diaper and Alex's pajamas, and went back to sleep. Life is too short to get four people out of bed just to change the sheets.
Yesterday before leaving home, we had to cover Daniel's port and lower back, site of his lumbar puncture, with numbing cream. I forgot his back. Then we had no Glad Press'N'Seal to cover the cream on his port with, so I borrowed some from a burrito in the freezer.
The smallest baby spent a good part of his afternoon in the swing. I'm probably going to baby-wearing, hippie-mama hell. Especially since neither of them have worn cloth diapers for several weeks now.
And on that note, the tiny one has finally fallen into a milk coma, and the bigger little is making sad noises in the bedroom, probably having awoken to discover his mama wasn't there. Good night to all of our dear ones out there who care enough to check in on us here on the blog!
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